Monday, October 27, 2014

On Sunday, I saw HowToTrainYourDragon 2 at the ever-excellent Museum of the MovingImage. The movie is good, even allowing for my brain damaged overreaction, and I want to call attention to an aspect of the story that I think is admirable*.

By this second movie, the protagonist, Hiccup, has lost a lower leg, and designed a fantastic prosthetic leg. His dragon is also disabled and is only able to fly with a prosthesis. Neither refers to their disability with anything but humor, and informationally.

There is a significant moment when Hiccup has just met Cate Blanchett**, and points out his "peg leg". There are obvious nerves there, but her character just carries on. The disability is part of Hiccup, but does not define him by any means.

So, I think that's pretty cool: the protagonist, the hero, is the disabled kid who is beloved by his village and his family, independently of his disability. The movie isnotabout the lost leg, the prostheses, positively or negatively, they're just there, like the sheep.

For me, that's not where the good ends, and although I may be stretching here, I think that they got something else right. (Spoilers ahead!) The villain of the story, Drago, is revealed in the last act to have a prosthetic arm. He lost his arm to a dragon as a child, and has lived since then to wreak revenge on all dragons. In most movies, that would be motivation enough, he lost a limb, of course he became a bitter and vicious murderous warlord, right?

Hiccup is having none of it, though, and calls him on his lie, saying words to the effect of: you're a bad person anyway, irrespective of your supposed justification, you like being a vicious, murderous warlord. The villain can't demur (and doesn't).

There, writ large, are choices that face those of us with disabilities, and those without: How do I approach the disability (which informs and is informed by everyone around me)? How do I approach my life?

Hiccup's choice, buoyed up by everyone around him, is the opposite of Drago's. He chooses to go forward, rather than justify bad behavior with a hidden and shameful disability. Hiccup doesn't hide, and is not ashamed.

It's not the core of the story. It isn't greatly highlighted. It isthere, though, and having disability be part of the scenery and a small, significant part of the narrative, is a good thing, and progress.

* I do think it's a shame that Hiccup and Astrid weren't gender-flipped in the first movie, but that's life; perhaps DreamWorks Animation SKG will make a different choice in future.

Friday, October 24, 2014

For most of the last three years, since I first got brain damage, I have lived with fear. It's a fear that is not likely to go away in a hurry either.

It isn't the fear of having more strokes; I certainly don't want any more, but I am not afraid of more strokes, and they're pretty unlikely.

I'm not often afraid of my vulnerability, either. I am an easy target: I can't run away, and can't defend myself, except to flail with my walking stick, which is as risky for me as anyone else. I have been*, but tend to avoid any situation where I might be again, so it's not a constant issue for me.

Most of the time, I'm afraid of falling. Whenever I get up, walk, climb a stair, step over a leaf, turn around, carry anything or take almost any action, I'm afraid. It's hardly paralyzing, but it is always there. I can avoid it by swimming, or sitting and lying in one place. I do plenty of those things.

The fear is based in rational thought, too: I'm 5'8" and weigh over 180lb**, and if I fall poorly it is going tohurt, even if nothing gets broken. Small children with the same level of coordination as I have enjoy a much lower center of gravity, more padding, and less mass. Gits.

Poor me, right? Sod that. What's worse is that the fear inhibits me. I'm afraid that if I walk up a stair with nothing to hold on to, then I'll fall over, or be at risk of falling, so I hold a rail or touch the wall and don't take the risk.

As I get better, and my motor control improves, though, the danger is that I still take the safer path. That I take the lower risk path with compensatory motion, rather than the more challenging, but ultimately more rewarding, high risk path of recovering function.

I have definitely noticed a tendency to safety that sometimes exceeds my ability. To keep getting better, I have to keep pushing myself in awkward ways. I can't let the fear rule me, because it isn't going away in a hurry, and it shouldn't, but it's not the boss of me.

* I was threatened anonymously. The risk to me that the threat was real, no matter how risible, was too great. I had to remove myself. He won, by threatening violence.

Monday, October 20, 2014

In an earlier screed, about the received wisdom of doctors, I promised some personal anecdotal evidence of recovery.

Six months after having strokes I was told by an eminent neuro-opthalmologist that it was very unlikely that there would ever be a change in my eyesight or balance, and thus my walking. Happily, I thought "bollocks," and carried on (perhaps I should make that a t-shirt).

Over the last three years, recovery has been slow and, on a daily basis, imperceptible to me. I can look back a month or six, and see improvement, but yesterday usually looks just as crappy as today is and tomorrow will be. There have been a couple of times when something has changed in a noticeable way.

One such change happened a few weeks ago, about a fortnight before the third anniversary of my strokes. Let me be clear that this is not an instance of my suddenly noticing a slow change, but rather a dramatic—for me—shift, where I had to figure out what had changed and why it made things better. Again, this happened threeyears after my brain was first damaged.

Until then, I realized, although I have worked to make my affected right leg function well, it was not able to bear weight. My center of gravity, therefore was shifted left, and hard to control. Since then, my right leg is able to take my weight some of the time, and as a result I have greater control of my center of gravity, and my body.

For me, this is a huge change, with substantial benefits (I walk better, turn more easily, stagger like a drunk less), and it is not muscular: my musculature hasn't changed. The change was in my brain. Pathways were permanently dedicated to this function, doing the work of brain matter destroyed by the strokes.

The net result is that my balance has improved, at least as far as the outside world is concerned. It's hard to tell whether my sense of balance has improved, I think it has, but my effective balance has indubitably improved. This doesn't contradict what the eminent physician said, but I do not think I am physiologically exceptional, nor do I think that recovery is unlikely. Hard? Yes. Slow? Hell, yes! Unlikely? No.

I am lucky: physical impairments are more simply overcome than cognitive ones. The damage was also to my brain, not severing any nerve fibers, which is a hell of a lot harder to fix. Nevertheless, my point is this: recovery is possible. It continues to occur, and occasionally, it takes sudden leaps, long after any damage first occurs.

Saturday, October 18, 2014

Several years ago, before I had any strokes, I was discussing life online with a friend, who is a prominent author and has a considerable online presence. She told me as a matter of course, that whenever a woman gets a sufficient online following, then she has to deal with a flood of misogynistic abuse that includes death threats. I was aghast, and incredulous.

I had worked for Google; I had been online for about 20 years: how did I not even know this happened? She cited the example of a woman who ran a knitting forum. Once it got about a hundred users, the abuse began, and continued until the site was closed, and the owner had been driven offline. A knitting forum.

I was astounded. I told friends and colleagues, butdid nothing, and in that I failed. Subsequently I was a bit preoccupied with recovering from brain damage, and that's mostly what I have written about, until recently my inaction years ago bore its inevitable toxic fruit, and this time I must try to do more.

You may have heard about 'GamerGate' and maybe thought it was just a few gamers being bad people in their odd little corner of the Internet, or considered it someone else's problem, or felt powerless to do anything about it. I disagree. It is symptomatic of an endemic ill in our society that we have a responsibility to eradicate. The abuse of women online is an expression of misogyny in our civilization and it must end.

There may have been useful or interesting points in GamerGate, but the moment a rape or death threat was made, the argument was lost, and those points became irrelevant. Threats of violence and harm are not acceptable, ever. They are not acceptable face-to-face, they're not acceptable in an online discussion, they are simply not acceptable in this society. The threats have been, and continue to be, made. The argument is over, superseded by a more pressing problem: someone thinks that making those threats is acceptable. It is not.

That is where we have the power and responsibility to act. Parents, tell your children that this is unacceptable behavior. It is never OK to threaten violence. It is never required to tolerate threats of violence. They have no place in our society. Those of us who play online games likewise have a responsibility to reject misogynistic behavior or speech whenever it occurs. Preferably leave after kiting a huge train of mobs onto the fools, but leave anyway, and if you have the facility, say why. The short-term cost to you is worth it to fix civil society. We all share that responsibility, everywhere. Don't be silent, don't wait for someone else to fix this, act.

I don't know anyone in my circle that I think is capable of treating people that badly. If I do, they are not welcome. Anonymity is an essential feature of the online world, but to abuse the privilege of anonymity to perpetrate acts online that would be unacceptable offline (and quite probably illegal everywhere) is cowardly and shameful. If you do that, I have no interest in knowing you, go stand in the corner and wear a dunce hat, because I think you're a fool.

Women hold no special appeal nor place for me: I'm about as gay as you can get. I hope I have never treated any woman as anything but a person in her own right. This is unacceptable behavior to anyone, and by anyone. If I have in the past, I was wrong, and I am sorry. If I do in the future, call me on it: I want to know.

I believe in a civil society. That comes with benefits and responsibilities: benefits like being able to walk down a street without being killed, roads, and garbage collection. Responsibilities like taxes, not killing people, and reinforcing social norms. Those norms change, society today is not the society I grew up in; that's often a good thing, and I fought for some of those changes. The corollary is an onus on us, the beneficiaries of that society to reinforce the behavior that is acceptable and to call out the behavior that is not.

Wednesday, October 15, 2014

Two years ago and change, I had a clear goal: I wanted to get home. It was not very generous to the home I had lived in for most of the recovery until then, my father, stepmother and sister's home. Nor very generous to them, or the many people around me who were invested in my recovery. Nevertheless I wanted to be well enough to go home to New York City, where I've lived all millennium.

Without realizing, I had a clear and attainable goal for exercise, and through exercise, recovery. Returning home, though, has been a problem. Sure I have a ton of friends here, and a great support network, but my goals for recovery have been too distant, and I have often failed completely and fallen into a mire of doubt, depression and inactivity. My goal to walk on my hands again is too far away to be useful.

I also have a different perception of expectations here in New York. When I don't go to the gym or pool, then I feel as though I'm the only person who suffers. Back in England, I feel more keenly that I am disappointing the people around me. It doesn't make a lot of sense: people in the US are just as invested in my recovery, and people in the UK are invested regardless of where I am (not to mention those elsewhere). It may not be wholly rational, but I find it easier to exercise in the UK than in the US.

Of course, since I'm aware of the problem, I'm trying to fix it, but setting a goal that makes sense is hard. Right now, I'm lucky: I have a definite date by which I want to be in as good shape as possible. That means swimming 3-4 times a week, and going to the gym 1-3 times weekly. Or I fail. No excuses, no alternative.

Come January, though, what then? Goals to lift weights aren't very useful to me. I already swim for at least an hour and a half, non-stop. What next? Something attainable, achievable through diligence, beneficial. If I think of something, I'll let you know.

Tuesday, October 14, 2014

Some of the earliest advice given to me after the strokes* was to doubt received wisdom. I have found that advice to be good, for several reasons.

First, most people don't really get probability; that's why casinos work. When something is classified as "very unlikely," it is important that the possibility still obtains: "very unlikely" is NOT "impossible." Recovery is possible.

Second, doctors don't know everything about the brain, although they are usually in authoritative positions. As much as we would like to get answers about our brain damage, and as much as we expect doctors to have those answers, they don't. I'm not saying that they're not experts, but research into the fundamentals of the brain is still happening. They don't have all the answers; nobody does.

Third, the physical brain and the insubstantial mind are related. They are not separate nor separable things. Some brain damage causes changes in personally, beyond the behavioral changes that are an inevitable consequence of having brain damage.

Fourth, recovery takes a long damn time. A lot happens that doctors never see, and rarely perceive. They often have too many patients, and are not geared to detect the slow, steady improvements that are a feature of brain recovery. By and large, our changes are not going to appear in blood, urine or even spinal fluid samples. A specialist might see you once in the first six months and never see the small daily improvements, or the hard work that goes with them.

Thus far, it is not possible to deny anything I've said. That truth should be enough for anyone. I'll speculate: The thought that recovery is possible is necessary, but not sufficient, for recovery to occur.

When we do not think recovery is possible, it is unlikely to occur. The brain evolved for efficiency: use as little energy as possible to perform tasks. Don't train both hands to be deft, stick with a dominant side, for example. This is antithetical to recovery** which requires that we do things poorly again, clumsily , slowly and awkwardly to learn how to do them competently and even well once more. When we don't think there's any point to doing things the hard way, then we don't and an opportunity for recovery, instead becomes further reinforcement for compensation. The thought that recovery is possible is necessary.

It is not enough, though, just to sit on your tush and think "I can recover!" to yourself. You have to do something about it. If you have brain damage, somebody, somewhere has said "use it or lose it" to you***. Recovery goes further than that, it requires that you force yourself to do things the difficult way, it is often tedious, and it mostly sucks. The alternative, inaction and stagnation, is worse. I'm lucky: the damage I have is not cognitive. I can fix physical things comparatively simply. I must do the work, though. The thought that recovery is possible is not sufficient.

Medical professionals use phrases like 'very unlikely' with experience, compassion and precision. It was unlikely. Believe that very unlikely means impossible, and it will stay unlikely. I dare you, instead to give them the lie, be the exception, and change the statistics, because recovery is possible.

In an upcoming post, I'll give you more personal anecdotal evidence of recovery. It surprised me, three years on.

* By Nigel, who had had his stroke six years before. He'd left in-patient rehab (and been written off by insurance, therefore) able only to wriggle the toes of his afflicted side. He walked into my hospital room.

** Although it is consistent with compensation, the side of rehabilitation I largely reject.

Saturday, October 11, 2014

My first strokes were three years ago, today; it's time for an update. I'm not sure whether to lead with good or bad news, but here goes:

First, I'm not dead. I think that counts as good news.

Then there's all the stuff that is still a problem: I have double vision, oscillopsia, weakness and a tremor on my right side, and a facial palsy. I may be forgetting something obvious to others, but regardless, that's some of the not-unexpected not-good news.

A lot has improved. I walk better; I have to go outside with my stick, but I still walk better. I'm fitter: two and a half years ago I was hard pressed to swim 25m without a break. Yesterday I swam just under 3km without stopping. That's good.

Some things, it's hard to say either way. I've been very depressed at times over the last few years. Sometimes because I have been flat broke, more often because recovery is slow, unpredictable,and hard to measure without the right equipment (see: broke). Right now, though, I'm not depressed. I'm swimming and going to the gym, I'm getting out a bit more, and even going on some dates.

Mostly, things are relatively good, for now.

I've been thinking recently about 3 years ago, and how bad I must have been. Bad enough that it's taken 3 years for some of the people who saw me right after the strokes to admit how terrible I looked. Bad enough that I signed a surgical release on the first day, because they were mooting surgery to stop the hemorrhage, and bad enough that I spent eight days in intensive care. I have bad enough brain damage that three years on, recovering from brain damage is my principal occupation.

Oddly, I suppose, I don't think of the brain damage, and associated problems as health issues. Hypertension, which probably caused the strokes, is a health issue, and one I'm being medicated for, but the neurological damage just doesn't seem to fit in that box. If you set the brain aside, I'm healthier than I've been for ages.

I'm used to being the guy with a stick. Used to having wretched balance, to avoiding crowds when I can, and to absenting myself when I must. The exhaustion that comes is not, I think, peculiar to stroke, but is instead a feature of the learning brain, and thus it is inevitable when your brain has been damaged and recovers.

I care less about mores. Again, this is not an aspect of my particular damage, but rather behavioral: I don't talk as much as I want, so I talk more to strangers, I'm nosier, and I share my dubious wisdom liberally. Writing is hard, so I run my mouth, which is easier. Disabilities are a great cover for this new habit: strangers can safely assume that I'm funny in the head, and who would hit the crippled guy anyway?

I can't say that it's been a good year, but it has been about as good as it could have been.

Thursday, October 9, 2014

Last night I watched the first few episodes of Marvel's Agents of S.H.I.E.L.D.. One of the characters, Fitz, has brain damage now, and it is, for me, one of the best written and acted rôles of the season.

He has frontal lobe damage that manifests as an inability to find words, and match words to ideas. For a character who is verbal, intelligent, and uses verbalization to trigger problem-solving, his affliction is crushing.

People around him treat him with kid gloves at best, and at worst as a fool only kept on out of charity. He is more frustrated than anyone at his own disabilities, but remains the intelligent person he was.

Perhaps I am projecting a little, but it is very well done, if y'ask me.

Wednesday, October 8, 2014

One of the aspects of brain damage is the propensity of corporations to seek out sick people and give them a good kicking while they are ailing.

It's not just the medical industry either. We all know how badly screwed that is, and how fortunate that only doctors worry about trivial things like the Hippocratic oath. No, it seems like every corporation is designed to find anyone with disabilities, and make life hard for us, because it isn't hard enough already.

The attitude of over-charging speculatively, because punters can either afford the charge or have time to research and challenge it, is unethical, lazy, and just plain wrong. I'm sure it profits shareholders, though.

Today's recipients of my rage, frustration and copious cursing (but not a nickel) are ConEd and Mt. Sinai. Screw them both.

Pages

A Stroke Diary

I had a bunch of strokes in October 2011, and this blog is about my ongoing journey of recovery. If you take anything away from here, I think it should be this: you can recover from brain injuries, you should not believe pessimists, even your doctors, but it's up to you to do the hard work.

Why "Scratch One Life"?

Initially, I thought that after my strokes, my old life was over; in many ways it is. The experience has taught me to look deeper, though: scratch the surface of my old life and you find the new one just out of sight beneath it. Now I'm trying to bring the new life to the fore, all shiny and tender.